I agree. Try dumping all grains. They all have gluten in them, just a different type then what causes the majority of folks problems. Could be your tolerance to them is finally worn down.

I feel so much better off of them. Man was not meant to eat grains. Paleo is the way to go.

As much as I dont want to ,, I have to agree. I was vegetarian or vegan for most of my adult life. I have desperately tried to keep non-meat sources protein in my diet . My body has decided other wise The foods I can currently tolerate are meats ,certain veggies ,certain fruits and very small amounts of white rice. I need to listen to my body

As much as I dont want to ,, I have to agree. I was vegetarian or vegan for most of my adult life. I have desperately tried to keep non-meat sources protein in my diet . My body has decided other wise The foods I can currently tolerate are meats ,certain veggies ,certain fruits and very small amounts of white rice. I need to listen to my body

I am beginning to think I need to be "paleo" ...sigh...I am 100% gluten free, dairy-free, soy-free yet still feel lousy. I make my own bread (well, hubby makes it:>), mostly eat meats, seafood, veggies, some brown rice, fruit and I still feel sick to my stomach or "racy". Sometimes, I have an Udi's product or Foods by George or Erewhon cereal with rice milk or coconut milk. For a treat, I tried a boom-choco-boom bar. These products are all gluten-free/SF/CF but they make me feel "racy" and/or nauseous. I have stopped having D, but I still feel lousy. Maybe I don't have enough time healing under my belt yet?Maybe it IS all grains, not just the gluten. Maybe it is something else. I had IgG/Elisa blood testing. SOY was a culprit. That's been out of my diet for a year.I feel as if everything is a potential time-bomb going in my mouth. Eating is like Russian roulette. Bummer!

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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

“If idiots could fly, the sky would be like an airport.”― Laura Davenport

"Do or do not. There is no try. "- Yoda.

"LTES" Gem 2014

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac 11/01/10. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.I. Win.

I am beginning to think I need to be "paleo" ...sigh...I am 100% gluten free, dairy-free, soy-free yet still feel lousy. I make my own bread (well, hubby makes it:>), mostly eat meats, seafood, veggies, some brown rice, fruit and I still feel sick to my stomach or "racy". Sometimes, I have an Udi's product or Foods by George or Erewhon cereal with rice milk or coconut milk. For a treat, I tried a boom-choco-boom bar. These products are all gluten-free/SF/CF but they make me feel "racy" and/or nauseous. I have stopped having D, but I still feel lousy. Maybe I don't have enough time healing under my belt yet?Maybe it IS all grains, not just the gluten. Maybe it is something else. I had IgG/Elisa blood testing. SOY was a culprit. That's been out of my diet for a year.I feel as if everything is a potential time-bomb going in my mouth. Eating is like Russian roulette. Bummer!

I can't eat nightshades (potatoes, tomatoes, peppers) or coconut. Maybe you are reacting to those also?

I can't eat nightshades (potatoes, tomatoes, peppers) or coconut. Maybe you are reacting to those also?

Thanks for the suggestion. You are not the first one to tell me this, but I was so hoping it wasn't a problem for me! I have to say, since last year, tomatoes burn my throat. I cannot digest peppers.. I LOVE coconut, so that one's tough to surrender, and this Irish lass eats potatoes A LOT. ....I'm going to cut those all out and see what happens! Maybe it will help with my joint pain. Who knows. Any relief would be great!

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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

“If idiots could fly, the sky would be like an airport.”― Laura Davenport

"Do or do not. There is no try. "- Yoda.

"LTES" Gem 2014

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac 11/01/10. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.I. Win.

Hopefully you like sweet potatoes or yams? They are not the same family as regular white potatoes and probably won't make you sick. I can eat sweet potatoes just fine, but not the white potatoes. Sweet potatoes are good you anyway, they have lots of orange stuff in them.

By the way , coconut is just something that bothers me, it may not bother you at all.

Hopefully you like sweet potatoes or yams? They are not the same family as regular white potatoes and probably won't make you sick. I can eat sweet potatoes just fine, but not the white potatoes. Sweet potatoes are good you anyway, they have lots of orange stuff in them.

By the way , coconut is just something that bothers me, it may not bother you at all.

Hi GFinDC!yes, I LOVE sweet potatoes and yams. I eat them regularly. The sweet yellow ones are really my favorite, but we only see them during the Fall. I am in upstate NY. Thanks for your help!Cheers!

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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

“If idiots could fly, the sky would be like an airport.”― Laura Davenport

"Do or do not. There is no try. "- Yoda.

"LTES" Gem 2014

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac 11/01/10. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.I. Win.

Is it possible that the problem is eating several 'gluten free' products at once or on the same day? For example, if you're eating two pieces of bread (10 ppm each, let's say), plus a glass of rice milk (5 ppm) and a couple of gluten-free cookies (10 ppm each), then you're getting 45 ppm that day. Maybe each of those separately wouldn't make you react, but all of them together might?

Is it possible that the problem is eating several 'gluten free' products at once or on the same day? For example, if you're eating two pieces of bread (10 ppm each, let's say), plus a glass of rice milk (5 ppm) and a couple of gluten-free cookies (10 ppm each), then you're getting 45 ppm that day. Maybe each of those separately wouldn't make you react, but all of them together might?

good point!

0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

“If idiots could fly, the sky would be like an airport.”― Laura Davenport

"Do or do not. There is no try. "- Yoda.

"LTES" Gem 2014

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac 11/01/10. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.I. Win.

I fully believe that all grains are damaging and if one is not reacting to them, it is only because just as with wheat,rye and barley, the sensitivity and damage has not reached the level that it can be recognized, YET. Just as we all ate those grains that fall within the generally accepted definition of celiac disease without awareness of how it was hurting us for so many years. I haven't been able to eat any substitute grains since going gluten-free and now, am reacting to corn in just the same manner as I would any bite of wheat with all the same symptoms, but I realize the extent of my damage is severe. I will never touch another grain and being as sick as I am, have no appetite for them - lucky me....;o)

I suggest you review the ingredients of all the gluten-free products that you removed from your diet. Look for all common ingredients. Many, many gluten-free baked goods have both soy and potato flour in them, and dairy and eggs are not rare either. All of these are common food intolerances for many of us, although not all will have any particular one.

Potatoes are part of the nightshade family along with tomatoes and peppers. So if you have problems with potatoes there is a good chance you will have problems with tomatoes and peppers too.

Over the years I have "tested" soy, potatoes, rice, garbanzo flour, other bean flour, etc. Thank God they don't bother me. I think someone's remark that perhaps I have gotten more sensitive could be true. I also think that many of the new products have too high levels of gluten for me. I am still pain free after almost 2 weeks. Gluten pain for me is specific, not general. I have lots of allergies and sensitivities and they have different symptoms. The pain of gluten is like a knife sticking in my gut. I have been hospitalized before it was so acute.I appreciate the help so many have shared. It is helping me get on a better program of eating. I have been sticking to steamed rice and now added some lentils. I looked to see if there were any grains in there and I washed them really well, just in case. I didn't use to do that. So, thanks again.

I am missing cookies, but probably don't really need them right now. I am eating a date instead. Dates are sweet, too.I made a kitchari yesterday that was so delicious, it is rice with lentils and Indian spices. I also made a tahini salad dressing which was awesome. So as long as I have some good tasting food, I am sure I am ok. Odd how dependent I have gotten on the comfort of some foods.

I had a huge revelation that good wines made in oak barrels have gluten. They even have a standard in Europe for the amount of gluten allowed! 200 ppm! Also, other wines made more cheaply have gluten additives. So much for a little wine.

Does anyone know if there is research on how much gluten damages the villi in Celiacs?

As much as I dont want to ,, I have to agree. I was vegetarian or vegan for most of my adult life. I have desperately tried to keep non-meat sources protein in my diet . My body has decided other wise The foods I can currently tolerate are meats ,certain veggies ,certain fruits and very small amounts of white rice. I need to listen to my body

I have been free of all grains for almost 2 months now. I have tested a few gluten free foods and a few do not cause a reaction. I am doing much better just sticking with veggies, fruit and fish. I read all your inputs every day and am learning a lot. Thanks.

Does anyone know if there is research on how much gluten damages the villi in Celiacs?

There is research, but there's no research on this that doesn't have a skew towards the less sensitive celiacs, least not that anyone seems to know about. I couldn't find any, and I started emailing some of the celiac research centers in the US. They either told me they didn't know of any without this bias either, or directed me to research that HAD the bias, to show me an example of 'how much gluten celiacs can eat.'

So far, there are a few studies on celiacs and how much gluten they can eat without villi damage. Here's the problem, though. To be a participant in these studies, a person needs to be healed to a certain level.

Where the studies have been done, the gluten free standard has ranged between 20-200ppm of gluten (The amount has dropped over the years.). And what have the celiacs been doing to get well before they entered the study? Eating this gluten free food, usually, which means the celiacs participating in these studies had to have HEALED while eating a diet of 20-200ppm of gluten (or a little less).

And then the tests discover that - surprise! - celiacs can eat just a little less than 20-200ppm per day and they don't have villi damage. Well, duh. That's like saying you can only come into a club if you have a purple shirt, and then doing a survey inside and concluding that purple is the most popular color.

As the gluten ppm has dropped over the years, so did the amount of gluten that didn't damage celiacs in the studies. That would seem to support the concept of the bias existing, to, IMO.

For an amount, though, the last test said that 50mg a day was safe, as I recall.

There was just one anomaly in that 50 mg study, which I take to be a person like us, who figured out what he had to stop eating and healed without eating gluten-free products. He had a clinical relapse, vomiting, the big D, etc... And his trial gluten amount was 5 times less than what they concluded was safe. He dropped out early because he was so ill, so they didn't include his results in the study.

I truly hope that someday, they look at recently diagnosed celiacs and try to see if they can get them to eat a gluten free diet of X ppm and then see how well they heal! And how quickly, you know? THEN you could do the same 'how much is safe' test and you'd have a more randomized trial, i think.

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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease